One in 1 Hundred. Living, loving and learning more every day from our child with a congenital heart defect (CHD). We share our stories here in hopes that they will help you along your own journey. CHD Blog, TGA, ASD, VSD, Pulmonary stenosis,COARC,artery stretching surgery.
Kristen Tragethon.

WHAT'S IN A NAME

The One in 1 Hundred comes from the statistic – the number of babies born with a congenital heart defect every year. When you are pregnant you hear a lot of statistics and they don’t really hold any true meaning to you personally until you become that 1 out of 100 and your life is forever changed. Once you are that 1, I don’t think you ever look at statistics quite the same again. Kalvin has not only touched my heart, he has kissed my soul. He has changed me for the better in ways I didn't know existed and for that I am truly blessed. I tried to explain this to a pregnant heart mom and I don't think she quite understood until her heart baby touched her very own soul. Here in this blog, I will try and share with you all our experiences and it is my hope that they will help and or provide you with some comfort. Thank you for listening.

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That time of year snuck up on us more so than in past years. Time for the return of one of our favorite little people, Flyie. I think the boys now get as excited for Thanksgiving as they do for Christmas all because of the return of one little man in a red suit. Our very own Elf on the Shelf. This year, Flyie arrived with a big gift. A basketball net for the driveway. Kalvin has just started playing basketball in a league and absolutely loves it. I think Flyie wanted to give the boys a present to enjoy as much as possible before the snow started falling.

Flyie has been up to a little more mischief this year. He got himself tangled up in toilet paper and then made a swing from the empty roll. Was caught playing in the china cabinet. Swinging with the barrel of monkeys.

And everyone's favorite prank...drawing on our pictures.

No wonder the little fellow came down with a fever and had to stay until New Year's Eve again this year. Remember the book from last year?

I discussed how hard it is for Kalvin to say goodbye to Flyie on Christmas Eve here.

Kalvin did much better this year. There were no tears. No anxiety. Just a simple note to Flyie begging him to stay a little longer this year. I think this is another positive result from our CBT sessions which I will talk about in my next post. There was also some talk of Flyie bringing a "girlfriend" with him next year. Kalvin heard from some friends at school that if he gets a girl Elf on the Shelf then his boy Elf on the Shelf could get married and have a baby Elf on the Shelf right in our home! Yup, second grade and the birds and the bees are starting to hum. We are babysitting the classroom guinea pig over holiday break and it seems the kids in the classroom are all hoping the classroom guinea pig (a girl) will come back to school pregnant from our pet guinea pig (a boy). The teacher had to explain to the classroom that the classroom guinea pig is too young to have babies and that all the "play dates" between the two guinea pigs will have to be highly supervised! Oh, the conversations to look forward to.

Flyie isn't the only one who has been up to more mischief than usual. The holidays can bring out the mischievous side in all of us.

Kalvin enjoying the Ohio State vs Michigan game with his grandpa. Family tradition.

Kalvin hasn't talked a whole lot about his fiancé recently, but when he does it is with such great emotion. If you haven't heard the story of how a six year old gets a fiancé, read here. Kalvin brought up Catherine's name the other day by telling me that he is really not so sure that she is interested in him anymore. "Why do you think that?" I hesitantly asked.

"Well, she runs away when I come over to her at recess," he sadly admitted.

"Sometimes girls do that when they are shy. Maybe she still wants to be your friend, but is being shy about it," I hoped out loud.

"She does giggle when I see her in the hall. And then I just giggle back. That is kind of like a little language we speak." he added, giggily. This boy is now eight years old and has the insight of a sixty year old.

"Right, see," I said. "She is still your friend."

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Braxton Miller...the quarterback.

"It is just, well, Cayden at school that I am worried about," he mumbled. "I think Cayden wants to be Catherine's husband too. You have to see how he looks at her when she moves her hair like this (Kalvin runs his fingers through his hair and slowwlly moves his head to one side). Cayden just stares at her hair. I just know he is in love with her too," he says with a heavy heart.

"Well, you can't worry about that," I say. "Just be yourself and have fun. After all, it is a long way away before you can actually get married." There I said it. Hoping not to burst his bubble.

"Right mom," he adds. "That is why I am thinking about Paige too. She has looonngg blond hair and is soooo nice. She is like a back up wife. You know, like the back up quarterback in football."
﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿﻿I really don't even know what to say at this point, "Just get to know all the girls and enjoy their friendship now. There are lots of fish in the sea and quarterbacks in football. Don't worry so much about the future. Enjoy the moment."
He just looks at me and smiles.

I just smile back.

Watching every play.

Kalvin really seems to feel like he has sort of secured his future. He knows who his wife will be. Checked it off the list. One thing he won't have to figure out in the future along with which profession to take up or where to go to college. I think it actually provides him with a sense of security and a little confidence. If we all could "secure" up our future and move on with life. If it were so simple. And it feels like sometimes we get caught up in the securing of our own future instead of living in the now. And when I think about it, living just to secure tomorrow and missing all that is happening today, can seem as silly as Kalvin believing he is actually going to one day walk down the aisle with Catherine. Or, I guess now possibly, Paige. The motivation behind some big life changes we are making over here is just that. We want to focus more on the now and less on tomorrow. Of course, all while still being responsible. We aretrying to live in the now, after all, no one is promised a tomorrow.

Kalvin has experienced separation anxiety for as long as I can remember. Not the kind of separation anxiety that makes one cry when they are left with a different caretaker, but the kind of anxiety that causes physical reactions day after day. This anxiety has prevented Kal from doing things he wants to do. Over the years, we have read more and more about the effects that early life trauma and pain has on the neural circuits in the brain that regulate stress. These studies suggest that pain experienced by infants while undergoing tests and treatment in neonatal intensive care may permanently alter future responses to anxiety, stress and pain. We couldn't ignore the studies any longer.

Taking it all in as the Sox are presented with the World Series Trophy.

This summer, while the Red Sox began their own Stay Strong campaign, we were around the corner from Fenway Park enrolling in Boston University's CARD Program to participate in cognitive behavior therapy (CBT). Kal was ready to learn some strategies to help him move through his fears and finally be able to do some things that he has really wanted to do, but just wasn't able to. Have you ever watched some one try to do something that scares them so much they shake, turn white and eventually throw up? Have you watched someone time and time again no matter what bribes are offered or consequences threatened, not be able to move forward? This was Kal when he would try many things. Things that we knew he wanted to do. We tried different strategies, but nothing made things better for him. We had to find a way to teach him to gain control over his own fears. This is what CBT is all about. Practicing what scares you most in small steps over and over again. I talked about Growing Up Brave back in July. We are so proud to report that along with the Red Sox celebrating becoming the World Series Champs, we too are celebrating our own victory. After many, many weeks (about twenty) and countless hours of exposure practice, Kal has learned to work through many of his anxieties and in the process has developed skills that will last a lifetime.

﻿﻿﻿﻿﻿﻿Big Papi won Kal's heart early on. He did not disappoint.
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At the World Series Parade waiting for the Duck Boats

After years of trying to ease Kal's anxieties, we finally realized that this was something that we could not do for him. This was something he had to do for himself. We have watched him struggle for years. We have tried various methods in attempt to help him become happier; including doing things for him to make his life easier and, the opposite, tough love approach. None of our methods were working. Ultimately, we really didn't have all that much control. Only Kal could learn how to gain control. CBT helped him.

He did it. Kalvin Strong!

Years ago, my mom gave me this anonymous piece entitled,

"To My Children: Things I can and Cannot Do."

I can share your life, but I cannot live it for you.

I can teach you things, but I cannot make you learn.

I can give you directions, but I cannot always lead you.

I can allow you freedom, but I cannot account for it.

I can take you to church, but I cannot make you believe.

I can teach you right from wrong, but I can not decide for you.

I can give you love, but I cannot force it upon you.

I can teach you to be a friend, but I cannot make you one.

I can teach you to share, but I cannot make you unselfish.

I can teach you respect, but I cannot force you to show honor.

I can teach you to obey, but I cannot answer to your actions.

I can warn you about your sins, but I cannot make you moral.

I can teach you about prayer, but I cannot make you pray.

I can tell you how to live in this world, but I cannot give you eternal life.

We are all works in progress, but the child especially so. How do we help them to see that each of them is a miracle, a wonderful work in progress?

We are in some ways like little pieces of confetti floating through the sky learning as we fall.

Who can resist smiling at a baby? Not many. Why is that? Most people will break out their funniest face and their goofiest voice just to try and make a baby smile. A baby they don't even know. But when it comes to other adults, we tend to be stingy with our smiles. Why do we often choose to keep our smiles to ourselves? Have you ever had someone smile at you and turn your whole day around? Have it completely warm your insides? A smile is life changing.

Kalvin and Finn shared some smiles at the local sunflower patch.

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I was walking home late from work recently. I winded my way through the back alleys of Boston in attempt to shave a few seconds off my walk. It was dark, really dark. I wanted to stop and change my shoes, but there really was no place to sit. I kept moving. As I walked, I spotted two people outside a bar sharing a smoke. I kept my eyes focused on them, mainly out of fear. I continued to move closer to them, gripping my bag a bit tighter as I walked. And then, out of nowhere, it happened. A giant hole appeared in the sidewalk. I landed in it. On all fours. As I tried to gather my belongings and my pride, I heard the sweetest sounding voice yelling to me, "Are you all right. Are you okay?" The voice was coming from the direction of the bar. Could it be the voice of the two people I was just so weary of? I looked up to see them running towards me. "Are you ok? Let us help you?" they repeated in the sincerest, kindest voice I have ever heard. I could feel their warmth. Their sincerity. "Please, let us help you," they begged. The woman's voice was so telling. As she helped me to get up, I looked up at her and there it was. A smile. In that moment, I knew she cared. It was written all over her face. And as embarrassed as I was, my fall had been overshadowed by their kindness. It stayed with me as I continued on my way. Wrapped around me like a blanket. Making me walk a little taller.

A little further on down the road, I took notice of a couple walking hand in hand in front of me. I was focused on the woman's jeans at first; thinking to myself how desperately I needed a new pair, when I noticed how peaceful they looked strolling arm in arm. They made me smile to myself. As I passed the couple, now standing in front of the bike rack for the new bike share system, I heard the woman comment to the man how she has been wanting to try riding one of the new public bikes. How fun they looked. I was thinking the same thing to myself. Our eyes met for a second. Still wrapped in the warmth from my earlier "helpers," I gave her a big smile. Feeling confident, I shared out loud that I too had wanted to try riding the new public bikes. My validation caused her to return the smile. I felt happy. My insides felt warm. I felt love from two strangers. A kind act is contagious. Kindness begets kindness. A kind act can create a miracle.

I was giving Kalvin one of his daily shots for the blood clot in his leg when I truly realized what a difference a smile can make. This boy can handle just about anything-staying in the hospital for days, MRI's, scans and EKG's, but he does not like shots. I was thinking how far we had come in these last few days. The tears and panic attacks had subsided. Exposure therapy was working. As I looked up at him, I really noticed just how terribly scared he still looked. Uncomfortable. Petrified even. All of the above. I placed my hand on his arm and smiled up at him. "Do you know how incredibly brave you are?" I asked. "You are the bravest person I know, Kalvin." Still smiling at him.

That is when I noticed the tears rolling down his cheeks as he managed to squeak out, "Thank you, that makes me feel so good." I often find Kalvin all choked up when I say sweet things to him. When I remind him what an amazing person he is. It is as if he doesn't hear them enough, which obviously he doesn't. I feel like I am always telling him how brave and wonderful he is, but maybe I am just thinking it and not verbalizing it as often as I think. Or at least, not sharing it with him. At that moment, I really understood how impactful a smile and a compliment can be. They can be life changing. Spoken words are so powerful.

Do you know someone who could use your smile today? A smile is a compliment. Share one today and notice how your own insides fill up with warmth.﻿

Kalvin woke up in the middle of the night crying. Something he has never done. He said his leg hurt. The area he pointed to seemed like a possible pulled muscle in his groin. So there we sat in the middle of the night doing stretches together. He never really went back to sleep. Nor did I.
He began limping as he walked. Using the wall to get down the hall in the morning.
All of this on the first day of school.

Fist day of 2nd grade. You can see in this picture how his left leg is bent a bit
to avoid having any pressure on it.

First day of pre-school.

"Pain, pain go away. Come again another day," we sang. And it worked. The pain went away. For four days. Gone. No pain during soccer. Baseball was fine. And then, Monday morning came. And with it, pain. In the morning Kal couldn't walk again. This time the pain lasted all day. He was still limping and holding onto the wall to walk when I picked him up from school. The pain was right where he had his angioplasty. Too coincidental to let it go unchecked. So off to Children's we went. It was a long visit. A long visit that ended with not such good news. Kalvin has a blood clot near the area in his femoral artery that was widened during an angioplasty procedure in his left leg on July 29th. Why the clot five weeks later? That seems to be the big question. One that has stumped the Interventional Radiologist, the Cardiologist, the Pediatrician and the Interventional Catheterization Chief. Hmmm, what to do?!? We went home and awaited instructions.

Two days later, I was driving home when I received the call. Kalvin was going to be placed on a blood thinner called enoxaparin. Lovenox. The only way to receive Lovenox is through a needle. Kalvin's worst enemy. The only treatment he is afraid of. He can handle a CAT scan, an echo or a lung scan like a champ. The only treatment that makes him cry. Needles. A shot twice a day. For two weeks. Here we go. We get to give him the shots at home. Lots of fun for everyone.

I was also informed that playing soccer was out. Not even at recess. Kal loves his recess play. And the recess soccer has helped him bond with other boys. Two weeks is going to be tough.

I continued on my way when a call came in from home. Finn had missed a step on the playground and hurt his arm. He was still complaining of pain hours later. The general consensus was that it was broken. Are you kidding me? Really?!?

I felt like crying myself. And not just tears. You know, the real kind of crying. The kind you need to do in the shower. I felt sick to my stomach. I tried to digest the news about Kalvin and wondered what awaited me at home. As I turned up the radio to drown out the thoughts in my head, the song playing, as if on cue, No One Said It Was Easy by Coldplay. It is has been confirmed. I am living a Lifetime movie. I was playing out a scene right there in my car. Music and all.

Finn was not excited to head into the doctor. Kalvin has always loved going to the doctor. We are blessed this way. Finn screamed the entire hour ride there. Pleading with me to turn around and go home. He said he just needed his ice and the pain would go away. Kalvin tried reasoning with him by explaining that Finn had nothing to worry about, that he was actually the one with the real problem today. And Kal didn't even know about the shots...yet. I was waiting to let the doctor tell him all about that!

This was Finn...the entire way to the doctor.

We headed into Children's. First a stop across the street at the Pediatrician's office. We got the word an x-ray would be needed on Finn's arm. The Cast Room and Hematology. Two new area of Children's we would be visiting. Looks like we will succeed in working our way through every department of Children's Hospital. One at a time.

After the x- rays revealed a buckle fracture in Finn's wrist, we were off to the Cast Room. And then Hematology Department to learn how to administer the shots of Lovenox.

You can see how Finn is holding his arm against his belly.
He did this all day but kept up his normal activity level.

Yes, broken. The bulge in the right bone is the buckle fracture.

Onto the Cast Room.

I love how they are both watching so intently.

Finn is not sure what to think. He tried to take the cast off.
This is the look when we told him it was here to stay for 3 weeks.

A visit with the Anticoagulation Services to pick up our Lovenox kit and we were ready to go home. Just another day at Children's Hospital. Kalvin loves to sing the lyrics "Until Every Child is Well" from the BCH commercials. Repeatedly.

Lovenox kit complete with our very own sharpie disposal box

Kalvin gets to wear this new fancy bracelet indicating he is at high risk for bleeding.
He was not thrilled at first.

As I gave Kalvin his first shot and real tears rolled down his cheeks, my own pain became real. I know he is genuinely scared. It is hard to watch. You try to do it fast, but he likes it slow. He delays the pain. I try being stern and forceful, but he is too strong and with a needle you can't wrestle around. I have to wait until he is ready. It makes it harder for me as well.

He starts saying he hates his life. Wondering why is this happening to him. He hates his leg. He repeatedly asks me why this is happening to him. I don't know what I would say or how I would respond if I didn't have the words of a dear friend. Words I referred to from here in an earlier post. They come into play again. I remind Kalvin that the why doesn't really matter. We can't control the why. Life can be unfair. Life can be hard. Sometimes, we don't have all the answers.

How we handle ourselves is what we can control and is what defines us. Makes us who we are. It is not the challenges placed upon us, but instead how we choose to face them that will have the most bearing on the path our lives will take. I ask him to think of Will. To think of Will playing hockey again and how he has responded to adversity. I remind him, when life hands you lemons you make lemonade. He seems to understand.

As summer winds down, we have been trying to make the most of our Tuesdays. Some Tuesdays, we have responsibilities to tend to. Like a post surgical visit to Children's. This Tuesday it wasn't so bad as the weather was not the brightest.

As we were making our way into Kalvin's post angioplasty checkup in Boston, we found ourselves sitting in Tobin Bridge traffic. On a glum day to boot. The traffic alone can dampen the happiest of people. It is not a pretty bridge and painting it multiple times, that I can remember, hasn't helped a bit. As we sat, I found us all getting a little grumpier.

Here she is, the top of the Tobin Bridge. Under construction yet again.

Coming out the other side really isn't much brighter.

Trying to think of some little happy to turn our mood around, I remembered the dollars we were given at the start of summer mentioned here. We were planning to "pay it forward" so as we approached the three dollar toll, I yelled out, "Boys, let's pay the toll for the car behind us and surprise them!" Everyone perked up and even got a little excited. A little happy. The fog appeared to be lifting.

We got out our money and quickly scooted to the Cash Lane. We told the Toll Booth Operator of our plan and handed over our money. As we drove through we sloooweedd way down so we could watch the expression on the driver's face as the Toll Booth Operator explained that their toll had just been paid by the car in front of them...us! It was fun. Not the most original "pay it forward" I admit, but it worked to brighten our day as well. We felt good. Happy.

Really, you could see the fog lift right before our eyes.

﻿

We had to wait for what felt like an eternity for Dr. Alomari. He was in surgery. It is hard to get grumpy waiting for a doctor when you know he is in a surgical procedure that is taking longer than expected. You don't even want him to rush because you think of the precious work he is performing. You also know what it is like to be that parent waiting while your child's procedure takes longer than expected. You pray all is going well for the patient and their family. You have been there.

Kalvin took a nap.

And Finn and I, well we visited the bathroom six times. Finn is officially potty trained. Thanks to a delayed appointment at Children's! See happy can be found everywhere.

And Kalvin's leg. It looks fabulous. We went over the ultra sound in detail. And yes, Dr. Alomari asked me if I was a nurse or a doctor. "Seriously, are you a doctor? I can't remember," he asked me. "And you are asking the best questions." For those who know me well, you know this really made my happy. Yes, I am a doctor. With a degree from Google and Kalvin.

Kalvin, Finn and Dr. Alomari. We go back in six months for another ultra sound. Meanwhile, physical therapy both in school and outside of school.

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BROTHERS

OUR MIRACLES

Kalvin was born with d-transposition of the great arteries (TGA), VSD, Coarctation of the Aorta (COA), pulmonary stenosis. Kalvin underwent 8 hours of by-pass surgery to correct his defects when he was 5 days old at Children's Hospital Boston. Kalvin has had two catheterizations to correcton his COA; one at 3 months old and another at 9 months old. The first one was unsuccessful and resulted in a damaged femoral artery in his left leg. His second catheterization was a success! As a result of his damaged femoral artery, his left leg is now about 1 cm shorter than his right and also has less muscle mass. Kalvin has received PT since he was 4 years old to help his coordination and OT to help his delayed fine motor skills. Kalvin also suffers from anxiety and has from a very young age. Kalvin is a well adjusted happy boy who doesn't slow down. He loves boating, beaches, baseball (Red Sox & Indians), football (OSU & Patriots), hockey (Rangers & Bruins), soccer and dancing to music. Kalvin is extremely active participating in baseball, soccer, karate, swimming, skiing, skating and piano lessons. The role Kalvin takes most seriously is that of a big brother. When Kalvin was five years old we were finally blessed with another baby boy, Finn (heart healthy). Finn is a miracle all his own. Finn is full of spunk and makes us all laugh on a daily basis. Kalvin is always looking out for Finn and trying to engage him in play. They are truly the best "medicine" for each other.

Thanks for Stopping by

Most that know me, know I love to talk about my children and most know that Kalvin, my 7 year old, had heart surgery when he was a baby, but that is probably all they know about Kalvin's heart. Once Kalvin entered school, I found myself explaining to the teachers and administrators that Kalvin's struggles were most likely a result of 8 hours of bypass surgery at 5 days old. Recently, I was introduced to some other "heart moms" and we began sharing stories and I found myself reliving Kalvin's surgery and all the experiences that came with it. It was amazing to me how far back in my mind I had actually tucked away many of the experiences, but how easily someone else's words could transport me instantly back to a certain place and time. I found it somewhat comforting to share the stories and relive the experiences and it seemed to help the other "heart moms" as well. I was sharing information, links, and pictures I had gathered and thought, "Why not put this all in one location and maybe help some families that I dont know or haven't met yet." And thus began One in 1 Hundred.